One of the hardest things I’ve ever been told is that I would be living with avascular necrosis the rest of my life. Worst, that I’d be in a wheel chair. It’s been 19 years since my AVN diagnosis and if I could go back to that day, this is is what I would tell myself.
I was a senior in college going out with friends one night when suddenly, something gave in my leg.
I was lying in the middle of a busy road and couldn’t walk.
A friend pulled me off the road. While someone called 911, he called my parents. He was shaking the whole time, and held me until the ambulance came. I think he was more scared than I was.
My parents arrived the same time the ambulance did and I was rushed to the hospital where they determined my femur broke. I’d been having a strange pain in my leg for weeks and had an x-ray done at urgent care days before the accident but nothing showed.
Months earlier I was parasailing in Spain.
I was told the fracture was severe and required surgery. They didn’t do surgery until the next morning though.
I’ll never understand why surgery was didn’t happen until 8+ hours later. Every minute of blood loss to bone is critical. Ultimately this mistake is what lead to my AVN diagnosis .
Looking back, I know without a doubt my hormone problems manifested in this fracture.
The femur is the largest bone in the body and hardest to break. This should have been a red flag to doctors that something was wrong with my body.
When I woke from surgery, I woke up to my worst nightmare.
I had a huge scar of staples from my hip that extended to my knee. I immediately thought what man is going to want me now? I’m botched. I’m not a woman. For days, I didn’t talk. It was just too horrifying to be real life.
When they made me move, I wanted to die. The pain was unbearable.
I was on crutches 3 months. Couldn’t drive, couldn’t shower, couldn’t walk to class. Did I mention it was my senior year of college in Wisconsin in the middle of winter? Thankfully I had amazing roommates, friends and parents who helped. Without their help, I wouldn’t have graduated that year.
My scar today.
Once I was released from crutches, I had to learn how to walk again.I lost all muscle in my right leg and was extremely weak.
The orthopedic never suggested physical therapy.
I will never understand that given the severity of my injury. But I was a fitness instructor and worked out frequently before the accident so I started going to the gym and gradually regained strength.
A year later, the pins removed.
It was the greatest relief. Those pins hurt with every step I took. I swore they were near a nerve because that pain was intense and never went away until they were removed. Six months after the pins were removed, I couldn’t abduct my right leg. It was locked.
I was 22 when I was diagnosed with avascular necrosis.
The prognosis wasn’t good. My right femur head had died from lack of blood supply and would only continue to deteriorate. I was referred to Mayo Clinic. When I got there, I was optimistic they would do something, but left with the most horrific thing a doctor has ever told me.
I was told by two doctors in not so sensitive terms, I needed a hip replacement in 6 months and needed to prepare myself for a life in a wheel chair. What’s worse, I was told NOT TO BE ACTIVE.
The doctors insisted I stay off my feet to protect what little bone I had left.
I was devastated.
For 10 years, I did what they said. I did nothing. I sat around, placed limits on what I could or could not do, passed experiences and missed living the best years of my life. They’re doctors. They know everything. Or at least that’s what I thought.
Until one day, I had enough and started walking.
If there were ever a moment in my life I could point to as my turning point, it was the day I started walking. I no longer told myself I couldn’t anymore. From that moment on, I told myself “I can.”
I can lose weight. I can be active. I can live life. It was the best healing I ever did for my body.
My AVN pain literally disappeared as the weight did. Today I’m in 90% less pain than I ever was overweight. My high level of activity also keeps the joint mobile which equates to less pain.
Today I wish I could go back to those doctors, shake my fists at them and tell them how wrong they were, how ashamed they should be for giving so little hope to someone.
A positive approach is more advantageous to a patient than a negative one.
Over the years, I’ve interviewed several doctors for my hip surgery knowing it was something I would be faced with eventually. Every doctor I’ve seen has been amazed how I’ve gone 18 years without surgery, stating scientifically it’s impossible. My response?
“It’s not impossible, it’s because I’m active.”
I knew I found the right doctor when I found one who agreed with me. He said he wished every patient understood the value of activity to pain management. Unfortunately, not every patient has my outlook because not every patient is willing to fight for their health the way I did. Many people accept what the unhopeful doctor says.
You never wake up one day expecting your life to be turned upside down by illness.
It just happens. And you do the best you can to deal with it in the best way you can, which may not always be what a doctor tells you. I’m not saying doctors are wrong, but I am saying you can do anything you set your mind to. If I had to go back, I would tell myself to…
Have faith. Never to lose hope. It will be hard, but your mind will take you where you want to go and your body will follow.
Since writing this post, I’ve had a hip replacement which you can read about in the following posts.
Too Young For A Hip Replacement
What To Expect Recovering From A Hip Replacement
Are you living with a chronic illness? How has it affected your life?
You know that I am a fan, advocate, and proponent of living life on your own terms. Put yourself in the driver’s seat of your own life! I’m definitely glad that you decided to fight for your right to lead a fulfilling and amazing life!
I know you of all people get this. Hope things are going better for you this week friend.
You have such an amazing story and you are such a fighter!Go you girl. Never let someone else telly ou what you can or can’t do.
Thank you Morgan! Sometimes I feel like fighter should be my middle name. Haha
GO YOU. Seriously, every day you decide that you win and your chronic condition doesn’t is something to celebrate. This follows a similar trajectory to my story, though mine happened much younger and wasn’t as extreme as the surgery. I was a teenager when I was told that my severe chronic pain was a result of extremely hypermobile joints caused by EDS, and that most EDS patients end up in wheelchairs and on opioids. And I said nope. As long as I make it a point to stay active, the pain I’m in is somewhat manageable, so I’ve grown to love all things fitness. Totally changed my life… and hopefully it gives me a future in which I can still be mostly-normal and engaged with the world.
Wow, you have your own incredible story Ellen! Thank you for sharing. I think it helps others to know they are no alone and how fitness can heal beyond what we think. Best of luck to you!
Wow, Megan, I had no idea that you suffered from chronic illness, and this story of overcoming is so amazing. It’s so true that only you really knows what can work with your body, and I’m so glad that you started with the gift of walking. It’s such a gift to live, even with pain; thank you for reminding me of that. <3 You are such an encouragement to many who struggle.
Thank you sweet Emily. You are amazing as well lady!
You are amazing! I love your outlook and your determination! It’s beautiful! Kudos to you for saying “No, I’m in charge.”
Thank you Tarah! I only wish I would had the courage to do is sooner.
AH I LOVE THIS. I can imagine the cynicism you prob have towards the medical community and I’m glad you took some responsibility for your own health and challenged the limits they put on you. Look how awesome you are now!
Oh yeah, especially after the hell I went through and to some extent still going through with my hormone problems.
SUCH INSPIRATION!!!!!! Thank you for sharing!!!
Thank you friend <3
Thank you so much for sharing your story! As someone living with two chronic illnesses (fibromyalgia, an autoimmune condition that causes widespread pain and celiac disease, another autoimmune condition in which ingesting gluten causes intestinal inflammation), I know that being active while you’re in pain is definitely not easy. I fully believe that being active has helped lower my pain from fibro, though and learning to love healthy eating and homemade meals has made adjusting to a gluten free diet much easier. When we lose so much control over our bodies thanks to chronic diseases, it’s so important we do what we can to fight back!
I am gluten intolerant and also have Hashimoto’s so I can understand where you’re coming from. I love that you haven’t succumbed to it. I was hoping when I wrote this to let others know that they are so much more than a disease or chronic illness.
Cheers to you, my friend. You are a tough lady!
Thanks Blair!
What an incredible story! Let me tell you, I am a total believer of listening to YOURself! I totally had doctors telling me I could NEVER get pregnant, my body was completely out of balance when really I knew all I needed was to eat more carbs. The minute I ate more complex carbs my hormones leveled to normal and I get my period every month around the same time, I am completely normal its funny because these doctors had me on all kinds of medicine and didn’t believe that nutrition was the big factor! Thanks for sharing your story!!
Wow! That is incredible you were able to do that. I am a firm believer that science is not the end all be all. Thanks for sharing!
Oh this post brings tears to my eyes. I have been dealing with chronic neck and back pain that makes it hard to get out of bed some days. I had doctors tell me to stop all activity just like you did. I refused to do that (but took care in how I was active) and I am able to manage my pain SO much better because of it. The days I am not active are the days I am in the most pain. You are so strong and brave to continue to fight and not let a doctor (or doctors) determine your future. You are awesome!
Good for you! And I can totally relate to you when you said the days you’re not active how you’re in more pain. This is exactly what happens to me. Being active is healing in so many ways!
This is an in revolve story, I love your determination and unwillingness to accept someone tell you what you can and can’t do
Thanks friend xoxo
Im 33 years old living with chronic illness. I have postural orthostatic tachycardia syndrome for 18 months and it has changed my life completely. I was bedridden for a year. This year has been better thanks to god, healthy eating, exercise, and helpful blogs like yours. Its been a long rode but I continue to be hopeful that one day I will become “normal” again. One thing illness has taught me is to not take one thing for granted. It has changed me for the better I appreciate moments with my family, food and nutrition it provides, kindness from strangers, and just loving life in general regardless of my situation. We just have to think positive and keep doing what is best!
Thank you for sharing your story Jazzy. It sounds to me like you’re doing a great job to handling everything, and a positive attitude is everything!
WoW! What an amazing story! That’s crazy you had so many docs (apparently all in the same boat) discouraging you from being active. And no physical therapy???? Congrats on your winning attitude, and fighting back!
Yeah, I haven’t had the best experience with doctors for some reason. But thank you!
I’m Suzlyfe’s mommy, Clare.
I read your response, today, to Susie’s blog post, and I had to come over and read about you.
I so admire your strength in truly “standing up for yourself” regardless of how long it took you to do it.
When a professional tells us that we must stop doing what we do everyday, it is very hard to not believe what they say, what they advise. It hurts our spirit and our drive….and sometimes we really do have to do as they advise.
But you know your own body and your spirit and sometimes you have to stand up and do what feels right for you.
I’m so glad that you did that just that!
You go girl!
Hi Suzy’s Mom! I’m sure you of all people know this too well. While I respect doctors for their expertise, I think sometimes they forget we are real people trying to live real lives. It’s so important to live in a way that’s right for you and remember medical advice is merely that. Simply advice. Thanks for stopping by!
I to have avascular necrosis ,they say mine is due to trauma to knee when i was exercising, trying to drop a few lbs,
Your story is amazing
Thank you and I’m sorry to hear about your knee. I wish you all the best and I hope my story helps.
You are so inspiring! I’ve never even heard of AVN before now, and I can’t imagine going through all you have (and knowing it possibly could have been prevented). Just reading about your journey is so frustrating. I’m so happy for you that you discovered activity to help the pain/issues (it’s amazing how that works). Kudos to you on your positive attitude! <3
Hi there,
I know this post is from last year but I’m going to leave a comment anyway. Your story is very inspirational. I was diagnosed with AVN in December and unfortunately I’m also battling a few other autoimmune issues simultaneously. At any rate I have stage 1&2 in my hips. I’m scheduled to go in for a core decompression on my left hip next Wednesday because in four months I’ve gone from no pain to holy cow every step hurts. It’s worse when I walk or am active.
I just wanted to get your ideas on what you suggest for increasing activity when activity is
one of the many things that exacerbates the
pain.
I know if I can lose some weight it will make things better but right now I’m at a loss as to how to get started (once my surgeon clears me of course.
Thank you so much for sharing this is incredibly encouraging and empowering. I’m glad that you were able to take control of your circumstances.
Hoping to follow in your footsteps!
Stephanie
I have lived with AVN for 8yrs now and have sickle cell disease. After my diagnosis I was devastated and tried being inactive but at a point I told myself I can’t live that way. I became active again. Some days the pain will be much, some other days less. The doctors say I need total hip replacement surgery but it’s expensive here in Nigeria and I can’t afford it but I don’t let it weigh me down. Life is bigger than chronic diseases and doctors’ opinions. Thanks for sharing your story it’s encouraging.